Silver-Lining Seekers: Meet my Friends with NF2 by ProQuest


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									Silver-Lining Seekers
Meet my Friends with NF2

             eurofibromatosis type two (NF2) is a genetic disor-            The effect of these
             der that causes benign tumors, primarily in the cen-       inspirational stories
             tral nervous system and involving the spinal cord          on me has been that I
             and brain. These tumors, despite being noncancer-          now have a new cause
             ous, commonly cause deafness, balance problems, de-        for which to advo-
             creased mobility, neurological damage and vision loss.     cate. I am determined
Constant monitoring of tumor growth and surgical removal or             to continue writing
radiation treatment can help preserve or restore a percentage of        about NF2 and have
hearing and vision loss. An auditory brainstem implant (ABI) can        included a chapter
restore residual to partial hearing for some. At present, there is no   about it in my upcom-
cure for NF2 and the tumors continue to grow back.                      ing book about hear-
   Even under the dark cloud of a possible new tumor, many peo-         ing loss. And don’t be
ple with NF2 are finding the silver lining. I had never heard of         surprised if you end
NF2 when I first met Rebecca Dufek at a local chapter meeting            up in the cause to cre-
of the Association of Late Deafened Adults. I am late-deafened and      ate awareness of NF2 Sherry Cochran
understand the struggles of losing hearing as an adult but my heart     after meeting these Photo courtesy of Sherry Cochran
went out to these individuals whose hearing loss was caused by          friends of mine. ■
a devastating and potentially fatal disease. While getting to know
the individuals featured below, I found we share many of the same
ongoing concerns related to hearing loss – which I expected – and        Sherry Cochran is a freelance photojournalist and published author. Her
                                                                         first book, Missing Pieces: A Woman’s Search for her Birth Family (www.
I learned of their extraordinary courage and determination to live was serialized in Hearing Health.
life to their fullest capabilities – something I had not expected.       Cochran, who is late deafened, is currently working on a book about hear-
They don’t want sympathy; they passionately want more public             ing loss and two fiction children’s books. She lives in Seattle with her
awareness of NF2, particularly advocacy and fundraising for re-          husband and family.
search to find a cure for NF and NF2.

Nathan Waldrip                                                          and uses speech and writing for communication. Because sports
Nathan Waldrip was always involved in sports while growing up           are very visual, the communication barrier is not a huge problem
and knew that he wanted to be a coach and teacher. At age 20 he         when he coaches football.
was diagnosed with NF2 and had acoustical tumors that were sur-            The principal of the school gives him a copy of the agenda for
gically removed, causing total deafness. He has had several smaller     staff meetings. He used to request note-takers or other forms of
tumors removed since then, as well as cyber-knife radiation on a        accommodation for situations where he would not be able to fol-
brainstem tumor. He currently has a few brain and spinal tumors         low along. Waldrip says, “I would be told I’m not missing much,
that are being monitored. The symptoms resulting from his sur-          to just sit with the other coaches and they would tell me what is
gery and NF2 are balance difficulties, neurological deficits, bilat-      going on. I finally gave up. I could speak up and demand better ac-
eral drop-foot and dexterity problems with fingers and thumbs.           commodations but then I’d have to pay attention and stop drawing
   When Waldrip was diagnosed with NF2 and lost his hearing,            football plays on my legal pad during the in-service meetings!
other people thought he would be unable to pursue his dream of              “Do not let anyone tell you what you can or cannot do,”
becoming a coach and teacher. Waldrip was determined to finish           Waldrip adds. “If you want something bad enough, go get it –
school and has become a junior high school football coach and           don’t let hearing loss or 
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